I started my blog for many reasons. I have had a blog since the day that Tyler was born. I updated it regulary. It was something that was easy to have and easy to keep updated. It has seen been closed but I have saved the updates and can go back to almost any given day and read what happened that day while in the NICU.
After a bit I changed to a wordpress blog and documented for a long time before coming over here. Blogging is therapeutic for me. It also allows others ( like my mom) and our family from far away to keep track of us. It was also a way for me to put our story out there. To met and find other moms in the same boat and to have questions answered.
As time went on that is how I have kept it. As a way to share, information, allow my mom ( and Nicky) to stalk me and yet still have the therapeutic part of blogging out there. Having a blog also opens you up to criticism. I don't mind criticism and a nice discussion of opinions.
That said (please be kind) a few of my preemie groups are up in arms about funds and donations given to certain people. While I don't have a problem with people donating. ( it is their money after all) I do have a problem when I feel like some information never gets out to the people who are donating.
So, I wanted to tell a little story about our Financial difficulties then and now with having a child born as a micro-preemie and now having a child with special needs.
We found out we were pregnant around May. I had insurance and was covered 100 percent. I was double covered. There were no out of pocket expenses. Then we had a "life change" and suddenly we found ourselves in a position where Dallas was not employed and I was losing my insurance. No insurance company that we could buy would cover me because I was all ready pregnant. Dallas got a job. I applied for medicaid. We were denied over about 50 bucks a month. So we just went with what we could. I was a student and so I bought the health insurance plan offered to students. It would cover a pregnancy with pretty minimal cost.
We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.
Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.
Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.
This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...
This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.
After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.
Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.
For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.
What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.
As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.
Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.
Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.
For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.
HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.
So why the long post?
While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.
We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.
Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.
I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.
Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.
We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.
That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.
Soap box over... if you made it this far.. you get a cookie!
We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.
Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.
Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.
This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...
This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.
- PDA heart surgery
- Head Ultrasounds
- ventilation 93 days worth
- life flight transfer by helicopter and life flight transfer to PCMC by ambulance
- Reservoir placement
- multiple eye exams followed by surgery on his eyes
After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.
Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.
For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.
What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.
As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.
Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.
Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.
For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.
HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.
So why the long post?
While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.
We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.
Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.
I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.
Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.
We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.
That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.
Soap box over... if you made it this far.. you get a cookie!
13 comments:
first of all- i want my cookie.
(jk) thank you for posting this. i didn't really know about preemies. medical costs are outrageous. but you have to do what you have to do.
i love you and i love ty. =]
SSI and Medicaid vary by state. It doesn't seem right since it is a government agency, but it is what it is. Some people can get SSI while their baby is in the NICU and others cannot. And, hang on to your hat... even if you get SSI, you do not automatically qualify for medicaid, in every state. Isn't it sickening?
And, if your hat didn't fall off before, hang on to it now... even if a child leaves the NICU fully disabled they do not automatically qualify for medicaid in every state. That's why some states have started waiver programs like the Katie Beckett waiver.
In many (if not most) states Medicaid and SSI are solely based on income. Same goes for WIC. Even if you get SSI and Medicaid you do not automatically qualify for WIC.
A few years ago we were trying to get a waiver to get therapy covered for Paige. The government employee told us it would be best for us to get divorced and have Jason pretend to live at his mother's house. Then I would qualify because of being a single parent with no income. There was no way I was going to divorce my husband.
Our portion of Paige's NICU medical bills was over $150,000. We were told by the hospital to file bankruptcy. We did it. I still feel sick about it but there was no way I could work after she came home.
Sickening isn't it.
You should feel very lucky that you live(d) in a state that allowed you to get SSI, Medicaid and WIC.
I watched the show yesterday and I was upset for different reasons. I'll have a blog post up about it in a few days.
On a side note.... you have such a cutie pie!!!
My husband just looked online at Evan's medical costs thus far. An average day in the NICU without any surgeries totals 2k a day!!!! Add the laser surgery, open heart valve, and the 2 intestinal surgeries on top of that- another 20 so thousand. Each visit from the NEO, GI, EYE Dr, etc Add it on! Just my bill alone for 2 weeks was around 70k. And of course with short gut my baby gets the best prescription based formula at 200 dollars for 5 cans then home health care, speech, OT, etc. The list goes on! The expenses are so high, that we don't even think about it, we would be sick to our stomach! The gas alone to and from the hospital for two hrs and the tolls each day are hard to deal with. But-- the experience of raising a miracle is priceless. Lets make a master card commercial together! haha
So yes, any one wants to make a donation to their local NICU-Gas cards are the best!
Well said.. I want my cookie now!
I LOVED living in AZ because of DDD and AHCCCS (insurance Wesley was on due to low birth weight). I never had any problems in AZ with money (until I put him in daycare...expensive). And the 1st year I had excellent coverage...luckily...because my helicopter ride was $10,000. I didn't have to pay anything. I would suggest to preemie parents to apply for every possible avenue to receive financial help. We haven't had a shunt replacement since I got my new insurance...but I know someday we will be slammed with bills for it. This year we are already at almost $5000 in medical bills (one emergency visit and hearing aides).
Ok....where's my cookie? =)
Thank you stacy. I appreciate your input. I didn't know that they didn't get ssi and medicaid together. Our nicu social worker told us that birth weight gets them medicaid while in the NICU.
I am looking forward to your blog regarding the show.
Nancy,
I have to thank you from the bottem of my heart for your post. Even though we didn't have a micro-preemie, we still had a NICU stay and tens of thousands of dollars in medical bills. It hasn't ended there with a child who required on going support, medical support ect. We are in a pretty bad place financially becuase of the medical bills from Josh. They don't end and you never feel like you get them under control. I have a hard time with the fact that people literally have to go bankrupt to pay for their child. It's just not right. We don't have any help coming in as far as Medicaid, SSI or ect. We are in the process of applying to SSI, but have no idea if we will get it. We make just a little too much in the past, but this year has been a bad one because of the economy and so my husband hasn't gotten the 18K in bionus money per year we have lived on. So now the day to day expenses are overwhelming. THe gas money to drive from OGden to PCMC constantly. The tube feedings, home health care, ect. It is a hard situation, but we would do anything to give our little Josh the best possible start in life. I just hate that it can come at such a high cost. I appreciate how honest you were, it helps to know that there are people out there that have faced the same situations. Thank you Nancy!
Very nice post. New Mexico has medicaid through SSI for babies under 2lbs and also has a great Medically Fragile Waiver for medicaid after discharge regardless of income. That certainly has saved us. One thing you mentioned made me want to mention that in New Mexico, my insurance specialist told me that pregnancy cannot count as a pre-existing condition. That made me feel better since I had paid COBRA for 18 months worried about what would happen if we got pregnant without insurance, which of course, we did the exact month the COBRA ran out. I had always assumed it would be pre-existing, but she said a pregnant woman in New Mexico can get maternity covered even at 8 3/4 months. Kiera's month in the hospital in March was $276,000 before the insurance and that does NOT include doctors billing...just hospital. Her 17 months from birth to discharge was over $4 Million. We didn't have to pay a penny of that, Thank God! She would have been worth it though.
I like gingersnaps or chocolate chip which can be mailed to 13112 .... :)
Therese
I WANT MY COOKIE!!!! I will be expecting it hand given to me from a little boy named Tyler since you mentioned in your post that Aunt Nicky stalks you!:) IT'S MY JOB TO STALK MY NEPHEW! :) And when you look at his picture, how can you not want to stalk that cute lil guy! :)
Hope you don't mind, but I am back! Typo on the NICU daily costs, make it 3,000 a day!!!! AND get this, I think I jinxed myself after commenting on your post this morning. I got our usual follow up call from Evan's Neo and get this! Our ins co called them and is requesting that E come home because it would be cheaper. Can you believe this!!!! I said I may look like a bad mother, but I only want my son discharged when all his doctors say it is time to discharge. Not the ins. co. Besides he still has major surgery to reconnect in June! Can they think about waiting a bit!? Ahhhhhhhh! I guess I should add this to my blog and stop taking up room on yours. I wish I could call you to vent, you are like the only one who would understand!!!!!! haha
Excellent post, Nancy! If I remember correctly, in WI you automatically qualify for SSI & Medicaid if your preemie is under 1200 grams. Income is not a factor, as long as the baby is in the hospital (and, in essence, is in a separate household w/o income). Beneficiaries get a $30 check from the gov. each month. As soon as the baby is discharged, WI factors in your income (as the baby is now in your household).
I have always loved your 'soup box' comments (even when we were compaions). My cousin and his wife are just like you. They had a baby born with a birth defect called CDH. He spent his ENTIRE 5 months and 25 days of life in the NICU of Childrens Hospital of Philidaulphia. Jacob had countless surgeries trying to repair the damage CDH did to his heart and lungs. He was on ECMO for several months. He also lost the ability to breath so he had to have a trach tube. He spent every moment of his life with tubes and wires all over him, prepareing for or recovering from surgeries. His bills ran over $1 MILLON just with in his first month of life.
My cousin and his wife would still go through all of that, even though they knew he still wouldn't live, just to have Jacob in their lives for 6 months. Even though Jacob died 2 1/2 years a go, his story still touches and changes peoples lives today!!!!
I agree, every family needs to have a Tyler and Jacob in their family!!!
What a beautiful post. I am incredibly grateful that our student health insurance had a very low annual out of pocket contribution cap, otherwise I have no idea what we would have done with the expenses, and our son was only 33w6d, only 16 day NICU stint, and it was well over 100k. We made $50 a month too much to qualify for the state insurance program.
What saved us is that we were further blessed in that the hospital we delivered at in Chicago has a very generous financial aid program. Because our two student "incomes" put us in the lowest income category, they forgave huge portions of what we owed them.
I think maybe you should send my cookie to that nice lady at the financial aid helpline who told me about the forgiveness program, when I was just calling to see about a payment plan.
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